It's out again ...

and I'm just sitting here crying.    I don't know why I'm feeling so overwhelmed by this right now - but I am.

It was her tube that was clogged again. This time I was sure. I gave her med (which I think is what clogged the tube as it was a powder dissolved in water - though not very well no matter what I did). Afterwards I tried to feed her and started getting "flow errors" from the pump right away. I did a quick check of the pump then decided to try to flush water down her tube. It wouldn't go at all. I kept pushing it and finally the syringe just popped off spraying the water everywhere.

I had no choice but to remove it. I'm not sure how soon I can put it back in. I tried to flush the tube once I had removed it - and couldn't then either. She cried and cried as I removed the tape. She has red marks from the tape even though I was as gentle as I could be in removing it.

Just feeling overwhelmed right now. Earlier today I thought I'd look at painting a room in the house. I thought it might be fun to do something that was not serious and thought that the color would cheer me up. I even felt frivilous in thinking about it - something I haven't had the freedom/time to do in what seems like a long time.  Feeling slapped back to reality pretty quickly.

Not meaning to have a pity party over here. It's not that big a thing - it's just one more thing and I'm feeling spent.

We visit the cardiologist tomorrow (Monday) and her ped wants a phone call after the visit. I'm guessing we'll start talking about surgery again.   We just can't keep putting this in over and over and over. 

I feel like I've rambled a bit now. Just feeling sad. My sweet Rebecca has been trying to cheer me up with hugs. I have so much to be thankful for - I really do. I know God is with me.  I know that He loves me.  I know that I have not been forsaken.  I know that things will work out. At this moment though I'm just Thank you for your prayers.

ETA:  It's 1:30am now.  I'm up with Eliana while she is getting her last feeding of the day.  Her schedule was thrown off when we went to church this morning.  Which was a nice time and not hard at all.  We didn't see many people there.  And then it was thrown off again when she had some by bottle and coudn't finish the feed.  She ended up missing the rest of that fed - or I would be up all night trying to fit them back in.  (I can't reinsert the tube for at least an hour after it's come out and she has eaten or she may get sick.   Highly likely given how hard it is to get it in.)

I can see in her tube and it is definitely the prevacid that clogged it up.  In more than one place - though mainly a big chunk in one section.  I tried dissolving the tablet in room temp water - by putting the table into the water, as well as adding water to the tablet.  The directions say not to crush, though I did stir.  I also tried shaking it when I added it to the syringe.  I couldn't think of any other options to try at the time.

Her tube is in.  As usual lately, it was tough to get it in.  It just gets stuck on her gag reflex - over and over again.  :cry:  My friend Rebecca helped this time.  She was calm, but I don't think it was easy for her either, especially when Eliana gets to crying.

Thank you dear friends for your notes and your prayers.  I am deeply blessed in so many ways!  Trying to go now and respond to your sweet comments.
With love,

Leslie